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Context <p>Children with chronic kidney disease (CKD) experience complex challenges affecting their physical, emotional and quality of life outcomes. Patient-reported outcome measures (PROMs) and experience measures (PREMs), collectively known as patient-reported measures (PRMs) are essential to capture these impacts, but their validation and suitability in pediatric CKD research remain underexplored.</p> Objective <p>To identify and evaluate the psychometric properties of PRMs used in research in children with CKD.</p> Data sources <p>Medline, Embase, CINAHL and PSYCinfo searched from inception to March 2025.</p> Study selection <p>Studies that reported the results of at least one PRM completed by patients or proxies in children aged 0–18 years with CKD were included.</p> Data extraction <p>Study and measure characteristics and psychometric properties of PRMs were extracted.</p> Results <p>One hundred seventy-five studies involving 21,423 children from 39 countries were eligible and included. 307 PRMs were identified, representing 121 unique tools across 23 outcome domains. Pediatric Quality of Life Inventory (PedsQL) was the most frequently used measure (50%). Approximately 40% were applied in the pediatric CKD population without evidence of external validation. Internal consistency was the most frequently reported psychometric property, assessed for 19 of all identified PRMs (6%). Disease-specific instruments (PRO-KID, TECAVNER) had good internal consistency (α ≥ 0.8).</p> Conclusions <p>There is firm reliance on using generic PRMs in children with CKD; however, most lack robust external validation in this population. Co-development and comprehensive validation of disease-specific instruments that reflect outcomes valued by patients and families are required to enhance the relevance of outcome assessment in pediatric CKD care.</p> Graphical Abstract <p>A higher-resolution version of the Graphical abstract is available as <InternalRef RefID="MOESM1"> Supplementary information</InternalRef></p> <p></p>

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Patient-reported measures in children and adolescents with chronic kidney disease and their validation: A scoping review

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年4月23日

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  • Angela Rejuso,
  • Hassaan Asif,
  • Martin Howell,
  • Chandana Guha,
  • Siah Kim,
  • Allison Jaure,
  • Anastasia Hughes,
  • Kristy Nicholl,
  • Kylie-Ann Mallit,
  • Farzaneh Bouroumad,
  • Jonathan Craig,
  • Armando Teixeira-Pinto,
  • Anna Francis,
  • Nicholas Larkins,
  • Anita van Zwieten,
  • Germaine Wong

摘要

Context

Children with chronic kidney disease (CKD) experience complex challenges affecting their physical, emotional and quality of life outcomes. Patient-reported outcome measures (PROMs) and experience measures (PREMs), collectively known as patient-reported measures (PRMs) are essential to capture these impacts, but their validation and suitability in pediatric CKD research remain underexplored.

Objective

To identify and evaluate the psychometric properties of PRMs used in research in children with CKD.

Data sources

Medline, Embase, CINAHL and PSYCinfo searched from inception to March 2025.

Study selection

Studies that reported the results of at least one PRM completed by patients or proxies in children aged 0–18 years with CKD were included.

Data extraction

Study and measure characteristics and psychometric properties of PRMs were extracted.

Results

One hundred seventy-five studies involving 21,423 children from 39 countries were eligible and included. 307 PRMs were identified, representing 121 unique tools across 23 outcome domains. Pediatric Quality of Life Inventory (PedsQL) was the most frequently used measure (50%). Approximately 40% were applied in the pediatric CKD population without evidence of external validation. Internal consistency was the most frequently reported psychometric property, assessed for 19 of all identified PRMs (6%). Disease-specific instruments (PRO-KID, TECAVNER) had good internal consistency (α ≥ 0.8).

Conclusions

There is firm reliance on using generic PRMs in children with CKD; however, most lack robust external validation in this population. Co-development and comprehensive validation of disease-specific instruments that reflect outcomes valued by patients and families are required to enhance the relevance of outcome assessment in pediatric CKD care.

Graphical Abstract

A higher-resolution version of the Graphical abstract is available as Supplementary information